Waiting for a smile

Things are going fairly well. As is so often the case in these situations, it’s the little things that are causing the most pain (literally). Austin was extremely irritated by the NG tube, which thankfully was removed this morning. His next complaint was his foley catheter, which caused my visiting brother pain to even think about. During rounds, the PICU docs agreed it could be removed but then needed approval by both the surgeons and the nephrologist (kidney doctor). So, after a few hours of calls back and forth, that too was finally removed. They are now weighing his diapers to record urine output, which has been slowly but steadily increasing. The other measures of kidney function look pretty good; one has risen but seems to be leveling off, as we’d hoped.

But now there’s something else bothering him. He’d been complaining all morning about his right eye. At first, I thought it was just gunky from being crusted shut but nothing seemed to ease his discomfort. I casually mentioned it to the PICU attending when she saw me sitting there with a warm washcloth held to his face: “His right eye seems to hurt a bit,” and she stopped what she was doing and said, “What? His eye hurts? He must have an abrasion!”

I briefly imagined them whisking him off to eye specialists for yet another procedure but quickly learned it’s not uncommon to get an abrasion during surgery. I don’t really understand why especially because they tape his eyes shut the entire time (never knew that before either; they sure don’t do that on Grey’s). Anyway, all he needs is some Bacitracin and then they’ll tape it shut while it heals. Now he’ll have an eye patch too!

He hasn’t smiled yet but I am hoping that once the eye is taken care of and he gets the popsicle he’s been given permission to eat, he’ll grant us one of those beauties. We expect to move back to our room by the end of today which is great news. We’ll all be much happier there and he’ll be thrilled with the additional stars that have appeared in his sky over the past two days.

So now we keep moving slowly forward, healing physically and emotionally. We still feel generally positive about yesterday but also have that sense (yet again) that there is no one simple answer, no single magical procedure that is going to make it all okay. For twenty-seven months now, we’ve been awaiting the day when we can say, “All better” and have it ring true. We’ve said it a few times prematurely of course. With radiation looming on the horizon and the risks that accompany it (kidney failure, secondary cancers), I wonder if we’ll ever really reach the end of this journey.

But we carry on. And right now, all we really need is a smile.